Palliative and end-of-life care at home

Palliative care improves quality of life for people with serious illness and those close to them. It can accompany active treatment and includes physical, psychological, social and spiritual support, planning and reliable coordination.

Recognition is probabilistic. Look for deteriorating performance, increasing dependence, recurrent admissions, progressive symptoms, reduced intake, weight loss, frailty, disease-specific markers and the clinician’s concern that death in the coming months would not be surprising. A change may signal the last days, but it may also represent infection, retention, constipation, uncontrolled pain, dehydration, hypercalcaemia, medicine toxicity or another reversible problem. Assess before labelling.

NICE NG31 advises recognising possible entry into the last days using signs such as agitation, Cheyne–Stokes breathing, declining consciousness, mottled skin, noisy respiratory secretions, progressive weight loss and increasing fatigue, while acknowledging uncertainty. Improvement or temporary stabilisation can occur. Explain this uncertainty in plain language and review frequently rather than presenting an exact prognosis as fact.

Start with the person. Ask what they understand, how much detail they want, what they fear, what matters today and who should participate. Some want to remain at home; others prioritise rapid symptom relief or avoiding burden on family. Preferred place of care is not a promise that can be guaranteed regardless of changing need. Revisit it when symptoms, caregiver capacity or available services change.

Communication should be paced and specific. Give a warning shot, share what is known and uncertain, pause, check understanding and invite questions. Avoid euphemisms if they obscure that someone may be dying. Use professional interpreters and accessible communication aids. Record the conversation, including what the person did not wish to discuss, without equating silence with consent.

Advance care planning records values, escalation preferences and who should be involved. Legal powers and advance refusals depend on jurisdiction: the Mental Capacity Act framework applies in England and Wales, with distinct legislation elsewhere in the UK. Verify the scope and validity of any proxy or advance decision. A decision against CPR concerns that intervention; it does not itself prohibit other appropriate treatment or assessment.

Symptom assessment remains diagnostic. For pain, identify site, quality, severity, incident component and cause, plus current opioid exposure and renal function. For breathlessness, assess distress, oxygen saturation when useful and reversible contributors such as bronchospasm, effusion, pulmonary oedema, anaemia or anxiety. For agitation, consider pain, retention, constipation, delirium, medicine effects, fear and environment. For nausea, mechanism guides treatment.

Non-drug measures matter. Repositioning, a calm environment, fan or airflow, relaxation, mouth care, pressure care and explanation may provide rapid comfort. Enable activity or rest according to preference. Family members need teaching about expected changes and clear instructions on whom to call; they should not be left to decide medication doses without an authorised plan and training.

Anticipatory prescribing prepares for likely symptoms when oral administration may become difficult. NICE recommends individualising likely indications, drug choice, dose and route using current symptoms, previous medicines, renal and hepatic function, allergies, interaction risk and the care setting. Availability of a prescription is not permission to administer automatically: a trained clinician should assess the current symptom and follow the authorised directions and local governance.

Avoid a generic four-drug formula. Opioid choice and dose depend on opioid exposure, renal function and symptom; sedatives and antipsychotics have indication-specific cautions; antisecretory medicines are not needed for everyone. Consult the current BNF and local palliative formulary or specialist team for exact agent and dose. The safest national teaching is the decision process, not a blanket regimen detached from patient factors.

When symptoms require repeated as-needed doses or swallowing fails, seek specialist or community-nursing input and consider continuous subcutaneous infusion under local protocol. Calculate the existing 24-hour exposure, account for route conversion and breakthrough doses and obtain independent checking where policy requires. Do not improvise conversion ratios from memory. Review the syringe driver, site, compatibility and symptom response.

For breathlessness in the last days, NICE NG31 says not to start oxygen routinely; use it for symptomatic hypoxaemia. Positioning, airflow, reassurance and treatment of reversible contributors may help. Opioids or benzodiazepines may be considered in appropriate circumstances under the guideline and individual prescribing, but medicine choice, dose and combination require clinical assessment. Sedation is not the aim of routine breathlessness treatment.

Clinically assisted hydration is an individual trial decision. Discuss possible benefits and burdens, current thirst, swallowing, pulmonary oedema risk and preferences. Mouth care can relieve dryness even when hydration is not used. Review any trial for benefit or harm and stop or reduce it if fluid overload or discomfort develops. Do not state that fluids always prolong dying or that they never help.

Care coordination determines whether home care succeeds. Share an up-to-date plan with general practice, community nursing, specialist palliative care, ambulance and out-of-hours services through available systems. Confirm pharmacy access, controlled-drug arrangements, equipment, continence supplies and who can administer medicines. NICE quality standards expect access to health professionals able to access records and care plans 24 hours a day, 7 days a week.

Support carers as people with needs, not as an unlimited workforce. Ask what they can safely do, sleep, health, cultural practices, financial pressures and whether they know how to get urgent help. Offer respite and bereavement information through local services. If home becomes unsafe or symptom control cannot be delivered, discuss alternatives without framing transfer as failure.

Verification closes the plan. Name who will visit, when symptoms will be reviewed, how medication administration is authorised, and what should trigger urgent contact or hospital transfer if consistent with goals. After death, follow local verification and certification processes, care for the family and communicate with involved services. Reflect on expected and unexpected events without implying that all deterioration was preventable.